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“How Living With A Disability Amidst A Pandemic Hits Differently”

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This post is a part of YKA’s dedicated coverage of the novel coronavirus outbreak and aims to present factual, reliable information. Read more.

“Hey, how have you been?” My friends would text.

I am not quite sure. I think this pandemic is taking a real toll on me. I haven’t been “out” Out in months, except for my two entrances and twice for my medical check-ups. I haven’t seen my friends for days. My independence after the pandemic has been dramatically decreased. I feel stuck. I can’t move out, and I can’t stay in anymore. I’m tired of this virtual world and sitting in my room 24/7.

This is what I really wanted to say, but instead, “I’m doing just fine!” This is what I always replied with.

These are how most of my chats for the last few months looked like. And feeling overwhelmed, extremely exhausted and crying myself to sleep without letting anyone know; these are how most of my days in the past months looked.

The ableist society and internalizing all that ableism used to make things worse on usual days anyway, leave alone thinking about ableism amidst a pandemic. The already existing inaccessibility and discrimination have increased. The stereotypes have doubled up. The independence has been lost.

Its a photograph of srishti, sitting on her wheelchair. She is wearing a blue colored Kurti. She is looking towards her right.There is a wall in the background.
I’d be lying if I said that I’m at my best emotionally right now. Because I’m not. But I’ll get there.

Just as the speed at which the prejudices and the marginalization have increased after COVID-19, so has the internalized ableism in me.

I guess living with a disability amidst a pandemic hits differently.

One belief that never goes away is that of being a burden. Even though I have a supportive group of friends and family, sharing what I’m feeling is something I’m unable to do. Why you ask? Because how do you overcome the beliefs about yourself that you’ve grown up Internalising?

The thought that “these are already hard times, and I do not want to end up being another added stressor in the lives of the people I love” always remains. And it doesn’t end there. Sometimes there are also feelings of “proving” your worth to others because, as a disabled woman, most of the times, you’re rarely taken seriously.

So there’s this added stressor of being productive. Of proving what you’re capable of, regardless of the fact whether you have the energy for it or not. And when that doesn’t happen, you feel disappointed in yourself. You were already not in a good place; now you feel even worse.

Because of the ableism that’s inside you, it gets even harder to reach out for support that you really need. So you also start feeling helpless, hopeless and whatnot.

Lethargy and certain thoughts start to take over your mind. And you think perhaps taking a lot of work would help but what it really does is exhaust you even more. What do you do then? Because there’s this vicious cycle that you’re stuck in feeling exhausted – taking up work more than you can manage-feeling exhausted.

You then take a break amidst a break.

I wasn’t planning on taking a break, but with all the stuff happening in my life; the lost independence, the heartbreaks, the ableism – both internalized and that by the society, I got really tired. And I had to resort to giving myself some rest.

So I did. And while I was at it, I wrote. I wrote a lot. Not only did it help me vent myself, but it also helped me understand myself better. It made me feel empowered. It helped motivate me to do more of the things that I love. So I practised clay modelling more frequently; I even took out my ukulele just the other night. And surprisingly, I also reached out to one of my closest friends. It took a lot of courage to do that, but I’m glad I managed to do that. And I’m glad that I have the kind of friends I have in my life.

It didn’t suddenly take all my worries away. Neither did everything in my life fall in place. But it really did help me feel better.

This article cum unstructured journal entry is pretty vague. But if I were to highlight, what I really want to say out loud is that it’s okay not to be okay. That sometimes, it does take a lot of time.

I haven’t even reached there myself yet. It took me months to be able to process what was really happening around and with me. And there’s still a lot of stuff left for me to process. I didn’t magically get back to my hobbies. And I haven’t been very regular at them either.

I’d be lying if I said that I’m at my best emotionally right now. Because I’m not. But I’ll get there. And the key to do that is to try and learn more about my emotions. To treat myself better. To love myself better.

It’s hard; it really is. But I kinda like it. I like this process of letting me heal myself.

And if there’s something that could be taken away from here, I’d want it to be the realization that taking care of yourself isn’t selfish. That being productive or not doesn’t really matter. There’s a freaking pandemic going on; if all you could do was just survive a day or two, that’s more than enough. That you don’t have to be so harsh on yourself.

And just as important it is to be able to reach out for support, just as important it is for us to create a space safe enough for our loved ones to reach in.

You must be to comment.

  1. Anupam Bose

    Thank you for letting it out♥️

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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